RSE Annual General Assembly October 9, 2010 Edinburgh RSE General Assembly 2010

Our Aims (bylaws) Article IV. Aims The aim of RSE is to represent the interest of people with Rett syndrome and their families, especially in the following areas: 1.To make Rett syndrome better known to the public, professionals, carers and those who are directly concerned in all European countries. 2.To improve the communication within the European Rett community. 3.To promote, as a representative European organisation, the interests of people with Rett syndrome and their families. 4. To expand the RSE to all European countries and to assist, if necessary, in the creation of national associations. 5.To promote research into Rett syndrome. These aims are to be especially attained by: 1. Co-operation with Rett syndrome associations within Europe and Worldwide. 2. Co-operation with other relevant international and national institutions.* 3. Co-operation with other social groups. 4. Exerting influence on decisions concerning legislation in relation to medical, health,and education in professional and social fields. RSE General Assembly 2010

Activity Report 2009 External cooperation, influence and advocacy Elected in the EUCERD (European Union Committee of Experts in Rare Diseases Eurordis Summer School on “Patient advocates in clinical trials and drug development” GA and tasks forces EURPLAN DIA Euromeeting patient fellowship programme EMEA (European Medicine Agency) in the PCWG (patient and consumer working group) Meetings Elected in PDCO (pediatrics committee) RSE General Assembly 2010

Activity Report 2009 Organisation of the 2nd European Congress Programme and logistics Godmother Vera Zvonareva (N° 4 WTA) Support for the creation of Rett Syndrome Russia Olga Timutsa Involvement in the EuroRett project European research network funded by EC Board Meetings RSE General Assembly 2010

Financial Report 2008 OPENING BALANCE on 2008.01.01. 4.815,30 Revenues (membership fees paid by patient organizations) 1.900,00 Expenses 702,54 (World Rett Congress – Paris, website maintenance cost): CLOSING BALANCE on 2008.12.31. 6.012,77 RSE General Assembly 2010

Financial Forecast 2009 OPENING BALANCE on 2009.01.01. 6,012.77 EUR Revenues 4,500 EUR (membership fees paid by patient organizations): Expenses Website improvement 2,000 EUR Support to economically weak countries 2,400 EUR Membership fees (EURORDIS, etc.) 500 EUR Projects (EABR, etc.) 500 EUR Miscellaneous 500 EUR TOTAL expenses: 6,400 EUR CLOSING BALANCE on 2009.12.31. 4,112.77 EUR RSE General Assembly 2010

On election of the board members On financial report Vote On activity report On election of the board members To renew On financial report RSE General Assembly 2010

Weaknesses Fragile organisation Division, dimergers in some countries Reduction of funds Unpaid membership fees Poor reactivity Questionnaires on organisation profile Duplication Organisation and cooperation to be improved RSE General Assembly 2010

Unmet objectives Article IV. Aims The aim of RSE is to represent the interest of people with Rett syndrome and their families, especially in the following areas: 1.To make Rett syndrome better known to the public, professionals, carers and those who are directly concerned in all European countries. 2.To improve the communication within the European Rett community. 3.To promote, as a representative European organisation, the interests of people with Rett syndrome and their families. 4. To expand the RSE to all European countries and to assist, if necessary, in the creation of national associations. 5.To promote research into Rett syndrome. These aims are to be especially attained by: 1. Co-operation with Rett syndrome associations within Europe and Worldwide. 2. Co-operation with other relevant international and national institutions.* 3. Co-operation with other social groups. 4. Exerting influence on decisions concerning legislation in relation to medical, health,and education in professional and social fields. RSE General Assembly 2010

Facing the future How to to advocate, to develop better and best day to day practices? We are entering the drug development phase (the challlenge of Orphan Drug): are we ready? Informed? Eurordis charts (relationship with industry, CT) Trained? To be an active partner ? Our role? RSE General Assembly 2010

Call to action To each country Membership fees Organisation Projects To change the definition of Rett Syndrome To become member of national alliance for Rare Disease Membership fees Country = sum of 10€ per member Organisation Board External presentatives Board of WG pilots Projects RSE General Assembly 2010

Working groups Working group on communication preparation of the next european congress in 2011 in Kazan New website and web portal PR plan Working group on guidelines and best practice recommandations Working group on fund raising and charity actions Under the partnership with Vera (european Tennis Federations?) Working group on research (patient-driven research) interface with EABR Working group on European High Level Advocacy RSE General Assembly 2010